Re: is LBD a family thing?

[Guest guest]

This is one very important reason why autopsy confirmation of the Lewy Body

Dementia diagnosis is so critical.

Research shows that the diagnosis is accurate less than one-third of the time.

So chances are not high that everyone who has a clinical diagnosis of LBD will

actually have an autopsy-confirmed diagnosis of LBD. The *only* way to get a

confirmed diagnosis is through brain autopsy. And, if you are going to have the

brain autopsied, why not donate it to medical research?

I think the Mayo Clinic is an excellent choice for where to donate a possible

LBD brain. They are actively involved in publishing LBD research -- some of

which utilizes donated brain tissue.

Please consider making these arrangements now for your family member as you

never know what other family members may be diagnosed with later on...

>

> My mother-in-law passed away 4 years ago from LBD. Turns out her 2 sisters

also had LBD but they did not have a diagnosis. ....

>

[Guest guest]

Even if we could have afforded an autopsy (which we can't), Mom didn't want

one and didn't want any part of her donated. This is not because she was

selfish. When she buried her mother (after 5 amputations) there was

nothing left below the upper-thigh. Mom wanted to be cremated whole and we

honored her wish.

It would be interesting to find out if there is financial assistance

anywhere for autopsies.

Kate

On Wed, Jun 27, 2012 at 10:48 PM, rriddle_travel <rriddle@...

> wrote:

> **

>

>

> This is one very important reason why autopsy confirmation of the Lewy

> Body Dementia diagnosis is so critical.

>

> Research shows that the diagnosis is accurate less than one-third of the

> time. So chances are not high that everyone who has a clinical diagnosis of

> LBD will actually have an autopsy-confirmed diagnosis of LBD. The *only*

> way to get a confirmed diagnosis is through brain autopsy. And, if you are

> going to have the brain autopsied, why not donate it to medical research?

>

> I think the Mayo Clinic is an excellent choice for where to donate a

> possible LBD brain. They are actively involved in publishing LBD research

> -- some of which utilizes donated brain tissue.

>

> Please consider making these arrangements now for your family member as

> you never know what other family members may be diagnosed with later on...

>

>

> >

> > My mother-in-law passed away 4 years ago from LBD. Turns out her 2

> sisters also had LBD but they did not have a diagnosis. ....

> >

>

>

>

--

Kate Knapp

UMN - OIT

*

" What's past is prologue. " The Tempest, W.S.*